So this is Christmas…I am generally in favour of keeping diabetes out of Christmas but there’s been a recent flurry of discussion on the inter webs about this topic. So here’s mysanta list:

10. Insulin for all

We all know people are dying because they can’t afford insulin. This is a shameful situation, 100 years after the discovery of insulin. What’s even more shameful is that people are dying in one of the most developed and richest countries in the world. At a practical level consider a donation to Insulin For All .

9.Affordable supplies

Similar to the above, but the things we need to manage our type 1 in an optimal manner are hideously expensive. Test strips let alone CGM and flash monitoring are beyond the budget of so many. C’mon let’s people with diabetes, governments and pharma/device companies work together to help people with diabetes.

8. Access to quality, non-judgemental and supportive HC and peer support

We have to engage with healthcare to stay alive, complications screening, scripts for insulin etc etc. It would be great if the judgement and blame approach we still see in many settings was banished for good. Some Drs and DNEs need to remember to do no harm and that includes psychological harm. It should also include being committed to quality, personalised care and being able to justify clinical decisions that impact people’s health.

I can’t believe it’s been more than a decade since DA pioneered this and yet you go to conferences etc and some presenters still talk about ‘diabetics’ having poor control and being ‘non-compliant’ <grrrr>. DA Statement here

6.Every HCP given basic training in what type 1 is and on what insulin dependent means

Now wouldn’t that be great, we wouldn’t have to stress when admitted to hospital that somebody was going to kill us and we wouldn’t have to explain the most basic of facts about type 1 (NO! we don’t grow out of it and YES we do need basal insulin even if fasting).

5.A really good virtual reality game of type 1 D

All HCPs should have to play this at least for a few months. Experience the grogginess of highs, the constant mental gymnastics, the hypos in the middle of the night and despite your very best efforts at the end of the game, you still get a long lecture that somebody with hindsight is able to produce about what you did ‘wrong’ to produce a high or a low.

4. Surgical tape

Now bear with me here, I know some of you were a little perturbed to see this on a list of suggestions for diabetes-themed Christmas gifts but I personally could use this under the Chrissy tree-think how handy it would be to tape up the mouths of annoying relatives who ask “Should you be eating that?”

C’mon admit it, this would make you feel pretty darn smug. Impossible to achieve this every time, but it’s nice to think there might be an answer our there.

2.A lifetime, on tap supply of your hypo fix of choice

I am so sick of buying hypo fixes-I just don’t want to have to think about it anymore. Oh and ones that don’t get icky when you find them at the bottom of your handbag/in a pocket 12 months later-that’d be great thanks.

1.The Cure

Yeah, we could all see this coming! A cure would render the rest of the list obsolete and that would be the gift of a lifetime!

Merry Christmas.

I’d love to hear your suggestions for what you’d put on Santa’s list-diabetes related -or not if you like. Please comment below.

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It’s diabetes awareness month and I have to admit I’m too tired right now to jump on board. Not sure why really, probably a combination of a a bit of burnout and the approach of the end of a year in which I chose to work 6 days a week. So for me I’m continuing with an approach I’ve been trialling for the last few months, making diabetes invisible. Haha anybody with type 1 knows that’s impossible, the boluses and basals, the carb counting the testing and adjusting-they won’t stop. I’m still doing all that but I’m trying to make it all less burdensome and trying to think about it less-at least for a while.

At the moment that looks like the Ypsomed pump and Libre. I never really took to my third Medtronic pump that I got about this time last year, the 640G is big and cumbersome compared to my earlier Medtronic pumps. The 640G would always bulge out of clothing and I got sick of having to wear it clipped onto jeans pocket or having this heavy bulge in a pocket-it was just too obvious and I could feel its weight pulling on me-a metaphor for diabetes if ever there was one. I was fortunate to be given the Ypsomed pump* earlier this year, I feel much more comfortable with its smaller size and lighter weight-it can be slipped into your bra without giving you a third square breast. Similarly the Libre, whilst visible during the summer months in Australia is invisible to me-I don’t feel it or see it (so long as I wear it on the back of my arm), testing is quick and clean and best of all it’s not going to beep at me to tell me that fifteen minutes ago I was high or low.

I see and talk with people who are looping, many feel that that makes diabetes less intrusive for them. I have a repaired Medtronic pump suitable for looping but at the moment I don’t want to think about setting it up, about adapting to something new again and I don’t want to wear CGM which is much bigger and obvious than the Libre. I plan to try looping next year and like most D tech innovations of which I’ve been sceptical I will no doubt find that it makes life with diabetes better rather than worse.

I like the idea of looping and the #wearenotwaiting movement, I really do, but right now I’m just wanting to make diabetes INVISIBLE. For this diabetes awareness month I’m leaving it to my buddies in the d world who are doing a fabulous job, as always, of raising diabetes awareness and making the burdens of D apparent to the non-D community. For this year I’m lightening the load just a little-a few ounces less pump weight, a little less time online and scanning rather than pricking-it’s little enough but that’s all that I can do to ease the burden for now, and that has to be enough.

Happy diabetes month and remember to wear blue on November 14!

*Ypsomed did give me a pump to trial & have allowed me to keep it, there was no expectation or obligation that I would write about or comment on the pump.

Diabetes care amongst hospital inpatients, as I mentioned here, was a topic of focus at the recent Australian Diabetes Congress #18ADC. I have highlighted this as an issue of concern before here and here and the anecdotes of hospitalised people with type 1 make alarming reading.

Whilst there was an overwhelming acknowledgement that there is much room for improvement in this area I remain concerned about the lack of concern around how quickly people with type 1 can suffer serious consequences of too much or too little insulin. There was no differentiation between the way that insulin-dependent, non-insulin dependent but on insulin and not on insulin ‘diabetes’ patients were being ‘managed’ in the presentations made from hospitals. Whilst the data recording systems that are reviewed by a nurse educator every 3 days (!) are great to identify type 2 patients who need a treatment review because of persistently high sugars etc. It’s too late if a type 1 is in DKA for a DNE educator to look at where their sugars were three days ago. I was struck by the lack of urgency in type 1-again I think this comes down to stigma about diabetes in general and a lack of understanding and appreciation that type 1s are walking a tightrope between severe hypoglycaemia and DKA every day-the state of “dangerous safety” that Banting referred to some time after he developed the 20th century wonder-‘drug’ insulin.

A really bright spot amongst the presentations was one by Rebecca Munt, a PHD candidate with a nursing background who also trains Diabetes Educators. Rebecca’s research was on the experience of people with type 1 whilst being an inpatient. I LOVE this way of bringing the voice of people with diabetes into the healthcare discussion.

This is what Rebecca presented as what we already know (telling and a bit alarming)

Rebecca’s research involved focus groups and interviews with t1s who’d been hospitalised in the last few years and a theory on this experience was suggested and co-designed with the research participants (that’s my very rough attempt to explain constructivist grounded theory-if I’ve got it wrong I hope somebody will tell me).

What Rebecca found was:

This really resonates with my experiences in hospital and with the many stories I’ve heard from type 1 friends and acquaintances. We are not being difficult, we have good evidence to support the fact that HCPs in hospital settings are quite ignorant about type 1 diabetes and we need to be vigilant to keep ourselves safe. We manage our diabetes 24/7, self-management should be the default situation unless we are truly mentally incapacitated.

Some years back the British Medical Journal published a great, type 1 diabetes specific article titled, What happens when you know more than your Doctor, amongst its findings:

Patients who have in-depth knowledge of their condition encounter problems when their expertise is seen as inappropriate in standard healthcare interactions, and expertise taught to patients in one branch of medicine can be considered non-compliant by those who are not specialists in that field.

Although patient education can give people confidence in their own self-management skills, it cannot solve the power imbalance that remains when a generalist healthcare professional, however well meaning, blocks access to medication and supplies needed to manage chronic diseases successfully.

I am still seething about a presentation at Australasian Diabetes Congress 2018, #18adc that discussed the results of a 12 month review of an “Insulin Dose Adjustment Clinic”, in a major teaching hospital in innerEastern-Sydney.

This was the least patient-centric, most egregiously substandard research methodology and ethically questionable thing I’ve seen presented. I know these are strong words but I stand by them not least because people with diabetes who attend this so-called clinic are being denied adequate care if the centre’s actions are truly the way they were presented in this talk, I have no reason to doubt what was presented but if some of the illustrious names associated with this hospital want to correct or clarify things, I’d be delighted to hear from them:

Substandard Research Methodology and Ethically Questionable.

Several times during the presentation the Registered Nurse and Credentialed Diabetes Educator making the presentation said that over a year, 7% of total referees to the clinic were “discharged from our care” for non-adherence AND this was in addition to the 20% of patients who were discharged because they didn’t respond to 2 attempts at phone contact. In total, 33% of people referred to the clinic did not complete the insulin dose adjustment clinic-if you were a business and 1/3rd of your customers didn’t return you’d be out of business/our of a job pretty quickly.
So why is this a substandard (as in it wouldn’t pass a High School research project test) research methodology? Simply because of an abject failure to define their terms.

When asked by an audience member what the definition of non-adherence that led to discharge was, the response was cringe-worthy. “Oh it’s a bit subjective I suppose… you can just tell”

EXCUSE ME YOU CAN JUST TELL??????????????????

How foolish of those of us questioning this presenter, I didn’t realise that clairvoyance was a skill utilised by public servants employed as health care professionals in NSW hospitals.

This is the most outrageous insult to ‘research’, to people with diabetes and to the many dedicated and diligent health professionals who are slaving their guts out to help people.

The look on my face to the “you can just tell” response elicited the follow-up “you don’t agree”- OH GOOD GRIEF, I said no and the response after an embarrassingly awkward pause where this professional looked bewildered that somebody would question her ability to “just know” something was …………….”Sometimes they’re rude”

WE ARE DENYING PUBLIC HEALTHCARE TO PEOPLE IN AUSTRALIA FOR UNDEFINED REASONS INCLUDING A SUBJECTIVE ASSESSMENT OF RUDENESS??????? No not abusive or physically threatening, no just “rude”.

I suggest person who is a RN CDE that you go spend half an hour in the Emergency Department of your hospital where your saintly colleagues are being regularly abused and spat upon by people in mental health and/or substance abuse crisis and learn what health care is all about. It’s an insult to all those hard working professionals who are subjected to verbal abuse and threats and yet they soldier on because they know they have a responsibility to save lives.

How dare you deny medical treatment paid for by Australian taxpayers for reasons you cannot even define. YOU SHOULD NOT HAVE THAT RIGHT! In fact I’d argue you’re bringing your whole profession into disrepute.

As you can tell I’m furious about this but not despairing. The reason I’m not totally despairing is not only do I personally know many health care professionals who aren’t like this, but there were good questions from the audience of healthcare professionals who were obviously also concerned about the nature of this presentation but during the conference I had a couple of quiet chats with CDEs I hadn’t met before. They worked in public hospitals, one just on the other side of Sydney from the offending party mentioned above, the other in the ACT. They gave me hope, their compassion, their understanding of the difficulties of diabetes care both from the patient and the practitioner perspective and their horror at the lack of professionalism in discharging somebody for non-adherence showed me that despite a few bad apples (or in this case it appears an entire diabetes “unit”) kind, compassionate, and competent care is out there you just need to sort the small amount of dirt from the gold.

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Yes, that’s right we’ve gone from 1 viable insulin pump choice to now having a choice of 5. I checked out what’s available at the Australian Diabetes Congress (#18ADC), formerly known as ADEA-ADS conference.

After the demise of the Animas Vibe, everyone’s been excited about the announcement that the Tslim is coming to Australia. All existing Animas pumpers will be upgraded to the Tslim (as part of Animas’s contract with J&J). I and some other bloggers were invited to a launch of the Tslim at a dinner on the first evening of the conference (AMSL provided the food and drink but there was no expectation or requirement that we comment, write about or mention their product).

The Tslim insulin pump is small and “sexy”. It has all the features of the much larger and clunkier Medtronic 640 pump BUT it’s considerably less bulky and has a touch screen.

Features:

3ml reservoir (it can sill be so small because the reservoir is a pouch/bladder rather than a syringe).

Talks to Dexcom CGM

The software is automatically updatable, so tech changes don’t have to wait 4/5 years for an upgrade.

All bolus calculators etc builtin

16 different profiles for basal and bolus rates.

Rechargeable battery.

As I’ve said before it’s great to have more choice and whether this is the right pump for you will depend on your lifestyle. It is quite a heavy pump despite its size and the removable metal clip that encases the pump makes it heavier. If you spend time off the grid, then the rechargeable battery is going to be limiting. For me, whose idea of camping is a hotel with a view of the mountains, not having to make late night dashes to the 7-11 to buy batteries would be a definite bonus.

Frank Sita of Type1writes has an Animas Vibe and the Tslim is the pump of his dreams, he is so keen to start on the Tslim that we’re trying to help him out with the #TslimforFrank campaign. Please AMSL, let Frank be one of the first to get the Tslim upgrade (what else are friends for but to beg on your behalf) #TslimforFrank

I am a still a fan of the Ypsomed pump, because it’s small, lightweight and doesn’t require a load of button pushes when all I want to do is a quick bolus. I’ve reviewed the Ypsomed here. I am looking forward to it talking to a cgm or flash device, I understand there is talk this may happen within the next few months.

Cellnovo were also at the Congress. This is another option for people who want something a bit more like a patch pump. My comments on it from last year’s D conference here .

Finally I did visit the Medtronic stand, they announced the ‘launch’ of their 670 pump system. There is a “but” though, the CGM that goes along with the 670 doesn’t have TGA approval yet, so they’ve announced a launch even thought the new pump isn’t available yet. To stop people rushing off to consider other pumps, they are offering that if you are upgrading or moving to pump therapy now, you will get a 64- PLUS 6 months worth of CGM AND they’ll upgrade you to the 670 when it becomes available. I spoke to the reps, and a really senior business manager and they weren’t to be drawn at all about when regulatory approval might be received for the 670 CGM. Also if I were in the position of deciding whether to go with Medtronic I’d be asking for some sort of guarantee about when the upgrade will occur once TGA approval is received.

NEW ASCENCIA METER WITH APP & IT’s AVAILABLE FREE

Sometimes if you hang about on social media too much, it can seem like everyone is using CGM or Libre and it’s only us Luddites who still fingerpick. Of course the vast majority of us with type 1 D still prick our fingers. Ascension (formerly Bayer) have launched a new meter, tiny and tests assure us that it’s extremely accurate. It also has an App that you can download that gives you loads of info about trends etc. It also allows you to have a second go at getting enough blood on the strip-this avoids the annoyance of wasting strips.

You can request a free (!) meter online. “To request a CONTOUR®NEXT ONE meter, visit www.contournextone.com.au. The CONTOUR®DIABETES app is now available to download from the Apple App Store (iOS) and Google Play (Android).”

A big thank-you to Diabetes Australia for inviting me to be part of #DAPeoplesVoice, DA covered my accommodation and travel expenses and arranged a media pass for the conference. Any opinions expressed about the conference are entirely mine and do not represent those of DA. Ascencia and AMSL provided food and drink whilst showing us their products but any opinions are entirely my own and there was no expectation from either company that I would write about their product.

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So it’s been a busy time here in Adelaide. As part of #DApeoplesvoice at the Australasian Diabetes Congress #18adc I’ve been to two product launches, presented at a symposium on co-design and tweeted my heart out at a full day of sessions and it’s only the first day!

So a few of the major things from day 1:

The tslim pump has launched in Australia (more on this later) but suffice to say it has all the features but a really small size. It looks set to be very popular. I put my money on Frank Sita being one of the first to switch over!

After tackling low carb I guess they decided “in for a penny in for a pound” and have tackled DIY diabetes tech as well. It’s refreshing to see that there is a patient focused approach in which the main point is that health care professionals shouldn’t abandon patients who are using this tech.

Some interesting sessions on hypos. There seems to be generalised agreement that the correlation between low a1c and severe hypos observed in the DCCT is no longer relevant. New insulins, new tech enable improved a1cs and reduced hypos.

Its a slow burn to get the voices of people with diabetes into the conversation. I think this year is a little easier than last year. The co-design symposium at which Renza, Frank and I presented got some really positive responses, thanks to Renza and Kirsty Bell for organising this.

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Through the window the last rays of sunlight are disappearing, the waiter stops by “Now you can see each other” he says, putting the flickering candle down between the glasses and the pate. There’s a momentary pause in our chatter, “You have no idea how true that is” Maryanne responds. I nod and toast my thanks to modern ophthalmology as I take a sip of wine.

Maryanne lives in Brisbane, I’m in Sydney and it’s been difficult to organise this catch-up drink. M is visiting Sydney for a conference, the weekend she arrived I was in Melbourne for my own conference so we’re meeting for an afterwork drink on Monday night. We skip lightly over the last 15 years, within a few minutes we’re talking about our eyes. Drawn to share again those dark experiences that nobody else really understands. Those years with impaired vision and the threat of blindness. We were young then, now we’re middle aged and feel as though that experience could have happened to someone else. We talk about how that fear influenced the decisions we made and the lives we led back then though and how that’s impacted on where we are now.

Next we’re discussing whether or not we should undertake PhD studies and career changes. We know that if our eye problems had happened 20 years earlier we wouldn’t be sitting here, able to see each other, able to drive and contemplate more post-grad study. I feel more able to envisage the future now than I could as a younger diabetic, I worry about what things this disease can still throw at me but so far I’ve survived its best efforts. If you happen to be deep in the trenches fighting retinopathy or some new complication, take heart, treatments these days are excellent and there is plenty of great life on the other side.

It’s now dark outside and the windows have turned into mirrors. I look up and see my reflection, I tell myself I’m doing okay for almost half a century of diabetes.

“All things shall be well and all manner of things shall be well.” Juliana of Norwich

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The other day I saw this non-diabetes related exchange on Twitter and it really resonated:

Over the last few weeks in particular I’ve seen a number of people lamenting a perceived loss of civility/kindness/supportiveness in the diabetes online community. It grieves me that people would have negative experiences participating in online communities. I have spent the last twenty years involved in this community and in the very early days of RealityCheck and the Type 1 Diabetes Network I invested emotionally, mentally and financially into building a community. During those early years we were attacked by a small number of health professionals (indeed a dietitian contributed nasty jokes about retinopathy anonymously to our forum when we failed to ‘enforce’ the messages he believed needed to be sent), a small group of people felt we weren’t inclusive enough so they spent time criticising us online and sending nasty reviews of the website to publications, people visited the forum paid for from the personal funds of the founder and yelled their criticism and aired their minor grievances there.

All this to say a degree of anger/nastiness/personal attack is not new in the diabetes community. What keeps me involved though is that for every person with whom I’ve had some sort of less than ideal experience online, there’s been 10 people from whom I’ve received empathy, validation, useful information and a warm fuzzy feeling. I would be so much the poorer, emotionally, intellectually and in physical and mental health without the online diabetes community AND I want others to experience this too. I came to realise that many of those who behaved in what we perceived were less than ideal ways were most in need of the help offered by peer support and their depth of feeling was indicative of just how important the community was.

All communities are made up of flawed individuals and we can’t always be at our best. I cherish the authenticity of real interactions and sometimes these can be uncomfortable-but the community needs diversity and will be stronger if independent thinking is allowed and sometimes we have to agree to disagree.

There is nothing more prejudicial to community life than to mask tensions and pretend they do not exist, or to hide from them behind a polite facade and flee from reality and dialogue. Jean Vernier

Of course there’s often a tricky balance between critique and constructive disagreement versus negativity and point scoring that may degenerate to nastiness. When I look at the rest of Twitter, I am really encouraged by the #DOC, there are occasional less than ideal interactions but generally there is a civility and search for mutual understanding and a sense of fairness that far exceeds that of most other social media interactions. Jean Vernier has wonderful insights into community life, being the founder of the world wide L’Arche communities of people with and without intellectual and developmental disabilities, he says:

It is difficult to make people understand that the ideal community doesn’t exist and that the equilibrium and harmony they imagine possible are things that come only after years of struggle, and that even then come only as flashes of grace and peace.

Community is the place of forgiveness. There are always words that wound, self-promoting attitudes, situations where susceptibilities clash. That is why living together implies a certain cross, a constant effort and an acceptance that comes from daily and mutual forgiveness.

I’ll leave the last word to Cherise who was recently on the receiving end of criticism that was not based on fact, and upon which a bunch of people on either side (including me) weighed in without doing a fact check first. Her response is all class and shows commitment to the community that goes way beyond her individual interests and gives me something to aspire to!

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Language matters is not about being polite or swapping one word for another that conveys the same concept.

The reason why people with diabetes get upset and angry about words is that they betray flawed assumptions, presumptions and inaccuracies NOT because they’ve hurt out feelings. We may get upset about rudeness, incivility and being patronised too but that’s a different issue and one that many of us can solve by simply seeking health care providers with basic social skills.

Here’s a little story to illustrate what I mean.

Jack’s GP referred him to an endocrinologist for his diabetes. The referral said:

“… Jack is a type 2 diabetic of 1 years duration. He is not adhering to treatment recommendations, having failed to control blood sugars with oral meds and life style modification. His HBA1c has been steadily increasing over the last twelve months and as of d/m/y it was 12.2%. …”

The GP didn’t cause Jack emotional distress. The words were recorded in a communication between doctors, trying to convey ‘facts’. So there’s no problem here-right? I mean they’ve been polite even used the word ‘adherence’ instead of ‘compliance’-gheez some people are just so sensitive? The problem here is with lazy doctoring!Continue reading →

In the midst of the launch of the UK’s statement about language and diabetes (good to see them catching up with the pioneering work of Australia on this) I’ve been thinking about the sort of communication that I’ve found most helpful around diabetes. Here are some of the things that have stuck in my mind as being really helpful over the years. Continue reading →